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AVM Survivors Network

Ongoing symptoms Spinal AVM


#1

Hi, new poster and AVM victim.

I had a thoracic laminectomy (T7) back in May 18 to bisect the fistula in my spinal cord. As far as my neurosurgeon is concerned all went well and my initial follow up showed a marked and significant improvement.

However, I’m still getting some issues with numbness in my buttocks, legs and feet. It’s not constant but is very regular and I have the most irregular toilet habits of my life (although thankfully no loss of control).

Additionally I’m still getting numbness/pain in my back, lower right shoulder and the front of my torso at the T7 ish site. My physio felt this was surgical damage but should it be going on this long?

I’ve tried getting some confirmation/reassurance from my GP/Consultant but they keep giving me vague that’s fine. I’m expecting a follow up in October as that’s my 18 month check up.


#2

Arawn,

While I don’t have the same ones, I have had some really “screwy” nerve connections and things happening. (My AVM has not gone in the spinal cord, but I’m living with a good bit of “stuff” because the docs don’t want to get close to the spinal cord because of potentially… well, you know.)

After my embolizations in 1986 (yeah, I know, I’m not young anymore), I had one of the most bizarre nerve connections going on - if you went about two thirds of the way between your left elbow and your left shoulder on the outside, I could lightly scratch there and I would feel it in the bottom part of my left ear lobe. No that is not a misprint…

That went away about 5 to 7 years later.

For the last 11 years, I’ve always gotten my flu shot on my left arm - because I never feel it. Nothing, zilch, nada.

I’ve had occasional numbness in the back and right side of my right leg and I have had that for, well, since the 1990s. It comes and goes and I can’t really nail down a “it always happens when…” And the doctors explained what might be needed if we wanted to try to resolve it. I said, “No thank you, I’ll keep my numbness and not run the risk of paralysis.”

And that’s the leg that since my January of 18 procedure has been much harder for my brain to control. Coincidence? I don’t think so.

I have two important nerves - the phrenic nerve - that controls your diaphragm. My left one was severed somehow with all of this. That means I’m basically working with 1 1/2 lungs. And my hypoglossal nerve - that has control of the left side of my tongue - those have both been irrepairably damaged.

Why am I giving you my broken nerve saga? Because I believe that it is of the utmost importance for every single one of us, that we realize that our pace and what we want might and probably will be substantially different than what your system will do.

Nerves, I’m learning, are very different and screwy things. They heal, if they do, at a pace that makes a turtle seem like a speed demon.

And you are not alone.

I’m not alone. Because we walk here together.

Thanks for letting me ramble.

TJ


#3

Thank you. Just hearing that its screwy for someone else makes me feel, if not better, just less anxious. :slight_smile:


#4

Then my “mission” here was successful. :slight_smile:


#5

Arawn! Noswaith dda!

Its great to have you join us. We do have a growing team of @Spinal AVM victims. Do join the Spinal group (look under the three-lines menu icon for “Groups”) and I’m sure you’ll be among friends.

By including the @ label above, it messages other members of the team and I hope some will share their experience.

You are not the slightest bit alone :expressionless:

Richard


#6

Diolch yn fawr Richard.


#7

In 2014 my spinal AVM was embolized, and later I had a laminectomy at L1-L2. I have some damage, but luckily they are relatively minor compared to what could have been.

I have neuropathy in both legs/feet. The numbness in my legs is relatively minor. My feet are constantly numb/tingling/ burning, particularly the left. I’ve gotten used to it.

It’s been over three years and my bowel habits have improved. It’s not the same as before, but very much under control.

A few months after my surgery I could no longer urinate and self catheterized six times a day. After 4 months, I just started urinating again. Nerves can repair themselves sometimes, but it’s a slow process.

My doctors have told me that the condition is so rare, it’s not well understood. It’s probably why they are vague. Keep track of your symptoms and make sure you describe everything during your visits.

Good luck!


#8

Thanks you, except for the bowel issues we sound like we have similar issues with the legs/feet. Its a relief to see I’m not the only one. I’m glad to hear you’ve seen some improvements to.